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I have Lichen Planopilaris

Skin Health | Last Active: Mar 7 11:42am | Replies (28)

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@newlpp

I have been diagnosed with LPP (with biopsy) more than two years. (Although I was found with Lichen Planus on my gum 15 years ago, which didn't have any symptom and was not treated). The LPP started with itching scalp and I lost a lot of hair in a few months. However, I was able to control the itching with Fluocinonide 0.05% solution. The hair loss was mainly around temples, behind ears as well as the top of my head. After a year, the top of my head seemed in remission. However, the area above my neck was still active and itching. My dermatologist is advising me to take Mycophenolate Mofetil. After reading all about its enormous long-list of side effects, I went to another derm for second opinion, who advises me to take daily 200mg Hydroxychloroquine and 100mg Doxycycline Hyclate. Right now I am waiting for my retinal toxicity screen baseline test, before the medication.
I am very reluctant to start either Mycophenolate Mofetil or Hydroxychloroquine. I am wondering if I don't take any oral medication, and just use topical medication for itching, will I eventually lose all my hair? Will the condition spread? Of course I hate to lose my hair, but is it worth to gamble my eyesight for hair?

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Replies to "I have been diagnosed with LPP (with biopsy) more than two years. (Although I was found..."

I am in the same boat and was wondering if you stopped your oral meds. If you stopped, did your hair loss progress?

My LP has now moved to my private mucosal membranes and doctors don’t know what to do. I need relief from pain so I can get myself to specialists to help me get this under control. What type of doctor helps with LP throughout body? I also developed severe rosacea moving from my beet red face down further and further my chest. I have so much cream and drops to put in my eyes I can’t see most of the day Do I see a rheumatologist? Is there such a thing as an autoimmune specialist?